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11-year-old in unbearable pain for years until a doctor finds the unlikely cause

It took years for Savannah Fulkerson's family to finally figure out what was going on with their little girl.

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ABC News

11-year-old suffers from an 'allergy' to sun

By Kayla Dalsfoist

January 25, 2016

It took years for doctors to determine the cause of 11-year-old Savannah Fulkerson's suffering. Her symptoms were baffling — bordering on impossible to explain — but her mother's intuition proved invaluable in arriving at the correct diagnosis.

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ABC News reports that the mysterious symptoms began to appear when Savannah was just 4 years old. Her hands were covered in blisters and sores after spending time in the Los Angeles sun, which led doctors to believe she was suffering from eczema. Andrea Fulkerson, Savannah's mother, was not convinced the diagnosis was correct. She tells reporters that when her daughter would venture outside, even for as little as 20 minutes, she was reduced to "uncontrollable screaming like she got hit by a car," then would "cry for hours on end." Fulkerson tried to provide relief for her little girl by enclosing her hands in bags of ice or drawing a cold bath for her, but to no avail.

In an interview with KABC-TV, Savannah describes the excruciating pain she experiences in heartbreaking detail: "it felt like lava was being poured on me," she tells reporters. "Like it burned from the inside out." Fulkerson suspected that exposure to sunlight could be responsible for her daughter's distress, but at that time, no doctor believed someone could be allergic to the sun. Still, Fulkerson recalls insisting to doctors, "it's got to be more than eczema."

When Savannah was 9, Children's Hospital Los Angeles came to the correct diagnosis. The explanation for the painful and itchy red welts was erythropoietic protoporphyria (EPP). According to the American Porphyria Foundation, this rare genetic condition stems from defects in hemoglobin production, which results in the release of toxic compounds called protoporphyrin. Those afflicted with EPP suffer from photosensitivity, and the American Porphyria Foundation lists "swelling, burning, itching, and redness of the skin," in addition to "mild to severe burning pain" as common symptoms.

Though there is currently no cure for EPP, the diagnosis has allowed Fulkerson to be proactive in alleviating the brunt of Savannah's pain. They focus on sun protection, including UV-protective clothing while limiting the amount of time she spends outdoors. ABC News reports that a recent study may have found a possible drug treatment, but it is still awaiting Food and Drug Administration approval.

Savannah may be confined to the darkness, but her spirit cannot be dampened. Despite teasing from her classmates, she maintains an optimistic attitude about finding a cure and has made adjustments to her definition of "normal" in the meanwhile. She swims in the evenings, has a trampoline in her living room, and dutifully dons her protective gear whenever she leaves the house. She shares her hopeful vision for the future with reporters, confessing that she aspires to have a house on the beach. Savannah declares, "when I get older, it's not going to change what I want to do ... it's not going to tear me down, it's going to build me up."